Hi :) my name is Katie, and next Wednesday I have an appointment with an opthamologist who is going to look for Kayser Fleischer rings, after the blood test a neurologist ordered (I have a bit of a problem with tics, my doctor thought it might be Tourette's at first) came back abnormal. I'm not planning on leaving my appointment without knowing if I have the rings or not! It's a bit scary, I just had my first appointment with the neurologist last month, it's all happened so quickly - and I never thought for a second that my tics could be anything serious, I've lived with them for more than twenty years without any problems other than minor embarrassment - but I'll feel much better when I know, either way. I can't stand waiting.
So next Wednesday I find out if I have Wilson's disease. I just thought I'd introduce myself...and ask if anyone here has any general advice or encouragement...I'm a bit freaked out by all of this.
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Opthamologist on Wednesday...
- By katie4
- Posted November 23, 2007 at 10:32 am · 3 replies
- In Getting a diagnosis
- Shared with the public
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- By Rose5
- Posted November 23, 2007 at 11:08 pm
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Hi Katie n welcome on board :)
I am not one to give you advice as I am a newby myself - learning all about Wilson Disease for my daughter who is 15yo.. She was diagnosed atthe start of November with the KF ring
-- Good luck with your tests
There is lots of helpful people in here - they been a God send for me with lots of answers
take care
Rose x
- By -Melissa-
- Posted November 26, 2007 at 12:43 am
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Hi Katie,
Welcome! I looked at your profile and looks like you're around the same age as me. I'm 25 and was diagnosed with Wilsons Disease back in January 2007.
In order to diagnose Wilsons Disease you need to have a few basic tests done. First you will have your blood drawn to check the ceruloplasmin level. A lot of times this is low in patients with WD, but not always. Next they will often check your 24 hour urine copper and if that is high that points towards WD also. Next you usually have an eye exam by an ophthalmologist and even if you don't have the K-F Rings (kayser-fleischer rings) you could still possibly have wilsons disease. There are many people (me included) who don't have the rings, but I do in fact have the disease. If no rings are found often times a biopsy of the liver will be needed to confirm the diagnosis.
I would like to also point you to the Wilson's Disease Association website (if you haven't already seen it) www.wilsonsdisease.org ....there is a lot of useful information on there. Great info about diagnosis and even information for your doctor. There is also a contact list of specialists all over the world who see Wilsons patients. If you are diagnosed, I would highly recommend trying to contact one of them.
Have you had any other symptoms? Do you know which blood tests you've had checked?
I know that this time is probably very scary for you, but just know that if you do in fact have WD it is treatable. Out of all the different diseases and conditions there are, this is probably one of the ones that you're lucky to have, because you are able to be treated. Although you will need to take medication for the rest of your life, which in the grand scheme of things isn't SO bad. :-)
Please feel free to email me if you'd like to chat, as I'm not on this message forum too often. I only periodically check in here. (I'm on other WD forums).... mjaffeldt@hotmail.com
Good Luck and let us know how your appointment turns out on Wednesday.
Melissa
- By kalapi
- Posted March 15, 2008 at 1:23 pm
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hi all of you.
hope Katie your apoointment went well. I have gone through the same at very young age of 8. when I was diagonised doctors in india did not have equipements to see K F rings. I had to stare for god knows how long to the slit light. It use to be a nightmare. I also use to get frustrated too. I don't know who is you doctors in UK. I was in London for 22 years I use to attend St Georges Hospital Tooting. If you nedd to to knoe the doctors names at st George's i can give you It has one of the best Neurology Wing in Europe. I don't know how advance is WD.Mine was picked up erly so I have minimal damage to my liver and also brian. If you need my help in any way you can email me at kalapikpatel@yahoo.com. I have friends who are GPs in Romford Essex i can give you their contact details if you are in vicinity
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